2 steps forward, 1 step back

S is still doing well. She has regressed a little bit it is already getting better. The scales on her back are pretty much gone and her legs are only slightly scaled. Over the last 2 weeks (mostly on vacation) the areas behind her knees, fronts of ankles, and inside elbows got dry patches. She is staying out of the pool for now (chlorine is drying) and wearing capris and hoodies again so she doesn’t scratch and open the skin. This isn’t a problem though because her current camp is indoors. Here are pics from today. 

Oh, and she went on the beach 3 weeks ago and didn’t itch!!!

Back:  

Back in different lighting:  

Lower Legs:  

Strange spot on her side that I’m treating with tea tree oil:

 
Arms:
 

Back of legs:  

Hands:

 

Gearing up for a great summer!

It is now June and school is about to be finished. This is month 26 TSW. We are so excited for summer! S was pretty much cheated out of her summer last year so we are going to make this one a great one; hopefully without hoodies and gloves. Things have slowly but surely improved since my last post in the beginning of the year. The itchiness has stayed away, we no longer use any type of treatment internally, and S still takes Epsom baths with ACV. She pretty much eats what she wants now. Her scales have started to disappear and all the rough areas feel smoother than ever! She wears shorts to school everyday! I don’t think she wore them at all last year. She often still wears hoodies over her tanks but she doesn’t need to. The biggest improvements have happened over the last 2 -3 weeks, see current pics below. She has been in the pool without any issues and I think the sun may have helped things. Next we will try the beach–that did not go well last year. There is some discoloration that still needs to heal but these areas feel so smooth. 

Taken today: kind of looks worse in pics than in person

   
        

Close up of lower leg  

New year, new skin…

S is doing so much better! She no longer has itching fits out of nowhere. She no longer wears fingerless gloves to school. She wore short sleeves for the first time since September 2013 to her winter concert. She no longer sleeps with multiple ice packs. She has been adding more foods back into her diet. Including little amounts of gluten. She is back to her normal weight! She still takes the chinese herbs. I can’t say that is what is helping; I really believe it is just Time! Still has scales on legs and back. She is still generally dry/grey all over. Face has been pretty bad for a while and just started getting much better. Have been using zinc at night. Will post pics soon! Happy New Year!

Sorry it took so long for me to add these pics: Added May 2015

Pics From March-May 2015

   
   

Back, leg, hand March 2015 

  
Staph infection on back – end of April. Was able to successfully treat with tea tree oil. 

   
   

Arms, legs early May

  
End of May 

Will give a new update with new pictures very soon. She is doing so much better!

Looking promising

I haven’t updated in a while because nothing has changed. Until a few days ago… There is no more redness; patches are pretty much gone and have been replaced by scales. Her entire body is covered with dryness and scales. I know it doesn’t sound good, but I know this means she is healing so I’m excited! Change is always a good sign. Once these scales come off we should see new healthy skin. She’s now 19 months TSW. Hopefully this is her last flare. We have added some foods back into her diet (mainly gluten free breakfast foods like waffles and pancakes, and gluten free pizza) and she is gaining some weight! Still doing the Chinese herbs. Not sure they are helping since time will likely be the only thing that really helps, but herbs are cheap and we like our practitioner. We see him again in 2 weeks. She rarely moisturizes, except for her face when going out. And the only thing she uses is olive oil. Stopping moisturizer didn’t hurt a bit. Moisturizer never helped anyway, and usually just made her itch more, or would sting. She says she does not want to try acupuncture. These pics are from the end of the day right before getting in the bath. Her feet are a LOT better! No more open cracks on hands! After a bath she is way less dry!

If this whole TSW idea is hard to believe or understand, try checking out some other people’s blogs. Some of the ones I follow are listed on my page. All for now.

Before bath pics:

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This one is after bath

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New ideas

S has been taking the Chinese herbs for several weeks now but it is hard to tell if it is helping because TSW skin changes so often. Her “light spots” seem to be getting bigger which is what happened last winter during her last big flare. I think this means this flare will be coming to an end soon. One good thing is that she seems less itchy!
Her hands are my biggest concern. Last night i started putting zinc on them. Others have posted that they find this helpful to dry up cracked spots. When the skin peels off there will be healthy skin underneath! I also have been soaking sore fingers in ACV and rubbing aloe from a leaf on them.
Hoping so see improvement soon!
She has a break from school coming up and I am going to start moisturizer withdraw-MW. Meaning no moisturizers on her skin. This should allow the skin to learn to make its own oils as it was designed to. She will be quite dry at first but should quickly improve. I have seen lots of others post success stories about this.
All for now…

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Also thinking of trying acupuncture. She tried one needle and didn’t mind it at all!

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Current update from August to now

These pics are from about a month ago

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She didn’t look great but it was much better than last fall and better than how she looks now(Will post those at the end of this entry)

She’s still seeing a chiropractor for wellness once every other week. Does not use soap or shampoo. Uses a natural conditioner for her curls. Has Epsom salt baths daily unless she would rather shower. Only uses olive oil to moisturize. We started seeing a Chinese herbalist who makes her a tea to drink twice daily. Now that I know she’s in TSW I don’t expect the herbalist to automatically cure her but maybe it’ll speed things along. The tea tastes horrible and she hated it at first but now drinks it like a champ(still hates it though)! Because of tsw and the state her skin is constantly in, there’s no way to know if removing any of those foods have helped her. I have started adding things back into her diet slowly. She’s extremely excited! And I cannot wait to see her gain some weight.
Here are some current pics

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Oh, and her warts are gone! It took a year and they went away on their own! That’s a very good sign that her body is starting to know how to heal itself!

Hands are really bad. Not sure if you can tell from that photo. Knuckles are all cracked and skin is very red.

It’s after midnight. Her nightly scratching like mad just started. Just gave her an ice pack. Now I’m going to bed. Soon I’ll update with the new products I just started using and my next idea for the end of the month.

Aah Haa Moment…

Recently I realized why S has only gotten a little better(temporarily) in the last year and a half since we started these natural treatments. And why she is currently having a major flare again since June. I came across a facebook group called Eczema TSW. It stands for topical steroid withdraw. With prolonged use of steroid creams the body becomes dependent and damaged. It can take years to heal. The only thing you can do is wait it out. Docs in this country rarely recognize this as being true. Many sufferers, and us parents of suffering children are considered crazy for believing this. They insist steroids are fine for prolonged use. If this were true, why would all the people I have met online have the same exact symptoms and cycles? Everyone’s pics look just like S. By the way, the pics I posted of S are nothing like what her “regular eczema” looked like her entire life until recently. Everyone wakes up around midnight itching like crazy. Everyone sheds skin so often, we sweep up piles of flakes daily. Please check out itsan.org . Dr. Rapaport and other advocates are working very hard to get the word out and change the way derms treat patients. The belief is that if a child never uses steroids they will grow out of their eczema, or some will find a food or environmental trigger, and cure themselves. Those who used steroids became addicted and kept needing more and more–so the docs gave more and more with increased strength. The only way to get better now is to stop all together and wait out the withdraw. It is extremely painful and uncomfortable at times. S was affected greatly in school last year and many adults have to leave their jobs. S is now at month 17 of her TSW. We didn’t even know we were doing this so it has gone by fast. I stopped her usage because it stopped helping her. The best thing I ever did for her!

Timeline (for the “next” doctor)-as of July 2014

S is very kind, friendly and outgoing. She is very sensitive and passionate. She is always talking. She loves to perform/sing. She is more itchy in the summer and at night time. She used to always be hot but recently started complaining about being cold a lot–Possibly because of the weight loss from the new diets.

Eczema started at birth with dry patches behind knees and inside crease of elbow. At age 2 we found out about allergies to egg, tree nut, peanut, sesame, pineapple, orange.
Around 6 months steroid creams started and were increased in strength over time. They were used for a few weeks and then stopped for a few weeks-months.
Around age 2 and 3 she developed staph infections and was successfully treated with antibiotics.
At age 9 steroids no longer worked at all. Her hands were the worst part and our biggest concern an the itching was interfering with her schooling.
This is when I started looking into natural treatments.
We stopped steroids April 2013.
May 2013 Dr. B put S on a parasite cleanse consisting of grapefruit seed extract drops, black walnut hull drops, and a spray taken orally called ParaClenz. Within a few weeks we saw great results. Swelling all over face and body went down–Originally i thought that was just the start of puberty.  Her hands looked better than ever. She did start to develop patches on her thigh though. We finished the 8 week cleanse and added another week to see if the thigh patches would go away. They did not. After about a month I began giving her another parasite cleanse called Paragone Kids. We did this for about 6 weeks. The entire time she got progressively worse with patches all over arms and legs.

October 2013 Dr. O started her on an oral antifungal and burdock blend drops along with the Candida diet.

She had one wart on hand.
At the end of October after seeing no results we went back and were told to continue the diet and start taking Manjista and Neem. She started occasionally taking Epsom salt baths.
Her heels began to crack and become painful. She started having this “head shaking” feeling for a couple seconds when she would lay in bed each night. We were thinking it was sugar withdraw. She lost 9 pounds. Her diet consisted of sweet potatoes, sweet potato chips, green apples, berries, shrimp, chicken, turkey, whole wheat tortillas and occasional gluten free pizza and chinese restaurant chicken and brocolli. She was extremely miserable and suffered in school but eventually she got used to it all!
Her heels healed after a few weeks and the head shakes stopped after about 3 months.
November 29, 2013 we saw Br. Ba who added dairy and smoked meats into her diet. (Everything is organic) She started S on L-Glutamine, Galactomune, Pro-biotics and Fermented Cod Liver Oil, and Phosphorus(6c daily).
About a month later phosphorus was increased to 9c.
Between December and February the warts multiplied to about 20 on both hands.
March 2014 Phosphorus was taken down to every other day and sulphur was added every other day(i believe 12c). IGg blood test was suggested.
Around January through March improvements happened and then stopped.
May 2014 results from IGg blood test came in and dairy was removed. Now diet consists of chicken, turkey, turkey bacon, apples, blue berries, rice cakes, water.
Lost 10 pounds again pretty quickly.

Phosphorus was stopped and sulphur is alternated with sepia(i believe 9c)
June 2014 skin started to look worse. Sulphur was stopped and Sepia started every day.
Skin got progressively worse July 2014. Not sure if it is a random flare or from the chlorine or eating out a lot on vacation. She has very big dry areas behind knees, inside arms, on top of hands and feet, and on neck and face. She keeps covered with clothing at all times except her face.
The only thing we use topically on her skin is olive oil(with evening primrose added). Coconut and shea seem to make her itch more. Every over the counter lotion has been tried over the years. There is a salve we use on extra dry spots with castor oil, sunflower oil, beeswax, manjista root, anantamul root, guduchi stem, neem leaf, licorice root vetiver oil.
July 2014 started seeing chiro for adjustments 2x/wk

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These pics are from last fall during her worst flare ever to that date

The beginning…

I am starting this blog today as a way to document My 10 yr old daughter’s struggle and soon healing of Eczema(now Topical Steroid Addiction/Withdraw). I have wanted to do this for a few years but never got around to it. Better late than never I guess. I wish I would have done this from the beginning and taken more pictures but oh well! This will be great for “S” to look back at one day and hopefully can help others. S knows about this blog and agreed to it if I don’t use her name or show her face.

S had noticeable dry patches(Eczema) and cradle cap soon after birth. By 6 months old she was started on low strength steroids which were increased every year or so. We were told they were safe if used for no more than 2 weeks followed by a 2 week break and could keep repeating if necessary. They would work after the first day or 2 but not for very long so a cycle of reapplying started. As a toddler she had 2 staph infections most likely from scratching open her skin with dirty hands. After that(arguably before that) I became a major germaphobe where S was concerned. But thank God she never did get another infection! Everywhere we went for years people would ask if we tried this cream or that cream, trying to be helpful. But of course we had tried everything. By age 9 it would take almost the allowed 2 weeks for the steroid creams to work and then they would need to be stopped for 2 weeks so she would get bad again right away. There was no longer another stronger steroid they could prescribe a kid.

At this point the derms had no other options to offer us except a miracle cream that may or may not cause cancer—No Thanks! This is when I started researching “Natural Cures.” I came across many diets and alternative doctors who offered different types of treatments. I read countless success stories from other regular people like us. I began to subscribe to a new way of thinking about how the body works and how we are supposed to treat it. I am a strong believer that everything that goes into the body, including foods, medications and topical agents, all have an affect on our well being. I now know that 80% of your immune system is in your gut. If the things you put into your body are not natural and healthy, over time your gut will become damaged. This often leads to all sorts of disorders, and toxins often try to release through the skin causing things like eczema.

I now only buy organic foods/products, will only use medications when absolutely necessary(have not needed any in ages), and am very selective about what goes on our skin. S has always had food allergies, likely because her gut has been damaged since she was in utero from my use of antibiotics and unhealthy foods, along with medications during pregnancy/childbirth, vaccines at birth and living in a world full of toxins/parasites we come into contact with everyday. It is rarely just one thing, but more likely a melting pot. And now we have learned about the severe and long lasting damage the steroids have caused(much more to come in later posts). She has been on very selective diets to heal her gut and locate possible eczema triggers. We have been to several doctors, all different types(who do not take insurance b/c insurance companies won’t pay them). She has taken several supplements to promote healing.

Soon I will post a detailed timeline with pictures of what we have tried. This is what I send to the “next doctor” when looking for a new type of treatment.

After that I will post why these things helped, but did not give us the results we were looking for. Then I will hopefully update with her current progress until she is healed!

S and I (especially S) have had a lot to deal with concerning all of this. It affects all aspects of life–especially these days(we are still in the worse before better stage). I always do my best to help her stay positive and remember how lucky we really are. She knows there are millions of people out there not as fortunate as us…